Once upon a time I was a fat little caterpillar whose contented munching was disturbed by visions of bright wings flying free in a world beyond the cabbage patch. When my caterpillar form could no longer contain that dream I entered the Chrysalis where thought became form.
This is my journey.Walk with me.This is simply who I am.

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Friday, November 05, 2010

A year ago I was diagnosed with renal cell carcinoma, the most common and most deadly of kidney cancers.

The journey to that horrifying diagnosis had taken 15 months. . I had assumed that the intermittent vaginal bleeding, joint and soft tissue pain, slight nausea in the mornings and tiredness were all symptoms of a late menopause. It was not until the end of July 2008 that I was finally made to take notice that something was seriously wrong with my body. The thought that it might be cancer had never entered into my mind until that night.

My mother had just suffered a stroke and was home beginning what was to be a full recovery. I was spending the night at her house to keep an eye on her when I woke in the middle of the night soaked to the skin with sweat. My body ached all over and worst of all was the relentless pain in my lower back, as though someone was trying to drill a hole in the base of my spine. When I went to the toilet, I discovered that I was bleeding.

I used a combination of breathing techniques, Reiki and EFT (emotional freedom therapy) to bring the pain and the fear under control, changed my bedding and night dress, and slipped back into sleep. The following morning I made an appointment with my doctor.

A cervical smear showed that there was nothing wrong with my cervix; blood tests indicated anaemia and raised inflammatory markers; tests for ovarian cancer were also negative. I was referred to a gynaecologist and endured two biopsies of the lining of my womb; the first did not have enough tissue and they lost the results of my second for almost six weeks before they finally showed up again. I was referred for ultrasound to check for any gynaecological abnormalities and other than a slight thickening in the womb lining, nothing was wrong.

Had I known then what I now know about kidney cancer, I would have asked for them to scan my kidneys too. That would have shown the problem immediately. However, once more assumptions created delay in dealing with the real cause of my symptoms. Not once was it suggested that my kidney might have been responsible for the bleed. They had ruled out menopausal periods as the source as blood tests showed my hormonal levels to be that of a post-menopausal woman. I had been through the change of life without even noticing it. The bleeding was considered to be the effects of a hormonal imbalance, nothing to be worried about.

The gynaecologist was very kind but having ruled out all of the problems under her specialisation, sent me away with her contact details and the promise to see me if I continued to bleed. I was so relieved to know that I did not have any of the gynaecological cancers that I did not even ask if there might be any other cause. It had taken from August to late January to reach this point in the journey.

I will continue with the next stage tomorrow but I want to raise the following red flags which might just save your life or the life of someone you love.

Never ignore bleeding however slight.

Never assume that anaemia is benign. Too many woman accept it as part of being female and due to losing blood every month.

If you start to bleed again after cessation of periods, even if it has been less than the usual year we use as a sign that menopause is over, do not assume that it is gynaecological.

Insist that all possible causes are ruled out.

If your inflammatory markers are high (CRP and ESR), do not allow any delay in investigation of the causes, particularly if you have other symptoms. If they rule out one set of causes such as gynaecological, ask what needs to be looked at next.

Do not expect your general practitioner to refer you on automatically to another specialist.

Do not expect your general practitioner to call you back in to discuss what else might be explored to explain your symptoms. You need to be the one who makes sure this happens.

Ask for your kidney function to be tested.

If you have high blood pressure, also ask for your kidney function to be tested. The three medications I required for high blood pressure prior to my operation are now no longer required.

Be prepared to be a persistent but polite pest if there is a delay in getting consultant appointment, tests etc. If your records go missing, create merry hell until they are found.

Without being paranoid, we must all be our own experts about our bodies. There is an abundance of helpful information on the internet. Use it.